Informed desisions

You loose all track of time and date here. There's nothing to do but sit and wait. I stare out the window and watch the clouds slowly drown out the sunlight. Wishing I was sitting in the sun, soaking up its warmth. Having a kid in the hospital for me feels like being admitted myself. The only thing I leave the room for is to get food. I don't go walking because my son needs me with him. And I am ok with that. Being a parent means to sacrifice your needs for your child's. Not every need, but those that you have too. If it means taking a walk or being here to calm my son down, ill be here always. Don't get me wrong, I do things for myself but the things that name me happy are different than before. I'm adjusting, or evolving or whatever. I adapt to my surroundings, to the situation. I make due. We have a beautiful view from Liams room. I get to watch the birds play on the grass and fly in the sky. Its nice. Going through all of this, watching Liams fight, makes me wonder. If you had known this could happen, would you have still gotten pregnant? Or more importantly if we spread the awareness about this condition as well as others would we be able to prevent teen pregnancy? Would the numbers of pragnant teens drop? My husband and I say that if we had been younger when Liam was born we wouldn't have been able to handle it. If we could really spread awareness, seriously get the word out there then maybe we could save some kids from having kids, force them to make informed decisions. I have decided to work on spreading awareness more delligantly when I get Liam home. Hopefully this next year everyone es efforts to spreading awareness will be successful. Hopefully one day CDH will be as well known as cancer. To all those out there making efforts to spreading awareness, keep up the hard work. It seems tedious sometimes but it will be worth it in the in. I am a believer than the more people out there working to spread the word the better. It doesn't matter what group you belong to, its the end result that matters. Power to those who are standing up for what they believe in. I wish us all luck because we all want the same The same thing. CDH awareness. Sent from Yahoo! Mail on Android

God is good. God is great.

God is good. God is great. Liam made it through surgery no problems. His lungs held up with no problems, no collapsed lung, just a slight wheezing that went away. They restarted the feeds about 2 hours after surgery and at 1am reached his goal. He only needed 1 dose of tylanol and 1 dose of ib profin yesterday for pain managementand hasn't had anything else since 6pm yesterday. This is amazing. Liam will be here for a few more days just to insure that he is putting on weight and that there are no complications that pop up. We have been so very blessed in our journey with congenital diaphragmatic hernia. Liam has been through so much but other CDH babies go through more or don't survive at all.Liam is just a miracle. Praying he continues to heal and grow and that very soon you all will be metting a chubby Liam. Sent from Yahoo! Mail on Android

It Blows Every time

And I dont mean hospital stays even thought they.blow too. Pretty upset right now. When Justin and I came back from getting food the nurse told us liams vein blew from the IV so he had to.have another one. 7 people and 6 pokes later they finnaly get it. 30 minutes later the nurse checks it to.find out it blew again allowing the fluid to leak into his arm. Now they have to bring someone else in to try again. Before you ask let me give you some background. Liam is a super hard stick. His veins move around making it hard. When they finally get the IV his veins always blow. There very many vein options for liam. On top of watching liam being poked and prodded I am feeling overwhelmed. I wish we were back at home already. I miss my.daughter and my cat.and my.bed. It would make it better if i could soak in a hot bath. Actually soak. This room.has a shower but its not the same. I'm praying everything goes well with the surgery and that we can take our little fighter home within 2 days of surgery. We've only been here a week tomarrow but it feels.like so much longer.

Day 6 Hospital Stay 5

Things happen that change our lives forever. Our view of the world changes, our hearts, the way we feel, changes forever. The color's of the world either brighten and become vibrant or seem to dull until they fade away to nothing. Ofcourse it all depends on that event, good, bad, traumatic, overwhelming, joyous. Lanie cause all good changes when she was born. Life was perfect. The events leading up to Liams birth, his birth, and the weeks following were the exact opposite. If I had to use only one word to discribe it, i would say "traumatic". Traumatic: 1.Emotionally disturbing or distressing 2.Relating to or causing psychological trauma 3.Relating to or denoting physical injury The color's had faded until I saw the world in shades of grey. Eventually the Colorado started shinning through. Its been 7 1/2 months. I still have issues seeing the beauty and color of the world. Atleast I have the will to fight to see the beauty. I still need my meds and I stillhave my bad days. Life isn't perfect but my view of what perfect is has changed. I used to think perfect meant free of blemishes or defects or complications. Now that my life is so full of those things my view has changed. Now perfect is everyone healthy and happy. And healthy is a relative term. Liam home with us is healthy no matter what his issues makes life perfect. That's the perfection I am shooting for, not Liam playing football, or getting straight A's or becoming a doctor. Just having him home with us, having the whole fam together is perfect. Liam is struggling and loosing a lot of weight. The doctor is confident that he will prosper with the GJtube. Total weight loss is about 2 pounds. He handled 5mls of pedialyte, about 1teaspoon, so we decided to up it to 10mls, 2teaspoons. Pedialyte is a good start. We aren't going to try anything else until after the surgery. Its a process of 1 step forward and 2steps back but were keeping the faith every step of the way. Sent from Yahoo! Mail on Android

Surgery for Liam

Liam is having surgery on Monday for a GJTUBE. Everything else we've done has failed. i know the surgery will go fine and the biggest risk is the intubation for Liam. We also know this isn't a permanent solution that this will only buy us time to allow Liam to put on weight and give us time to figure out what's wrong with his tummy I wish he would handled the feeds and been fine, I wish he had never been born with CDH but that's not going to change things. My little monkey boy is a fighter, survivor and a miracle. Hes stronger than most of us and I have faith in him. In God. Soon this will all be a memory. We may not be able to laugh at it but we will look back and gain strength, courage and faith from these times. Sent from Yahoo! Mail on Android Sent from Yahoo! Mail on Android

yay for visits

Liam hasn't handled feeds so doctor Kennison called the GI to let him know Liam needs a GTtube. I'm still waiting to talk to the GI. Hopefully he makes it in today since that's what Kennison was.expecting. It's 4:30pm now so I really don't. Think it will be today. Liam has just been hanging out today, not crying or throwing fits. He hasn'tj been happy either content. Had a nice visit today with Justin, Lanie and Laura. I think Liam was even happy to see his daddy and grandma. Unfortunately Lanie couldn't come into his room to see him. Because of RSV season no one under 12 is allowed in patient areas. I had missed my baby girl so much. We had a chance to have lunch together, piazza from the cafeteria ofcourse. We took our pizza to the playground then she got to play princess in the tower. I wish we could of had a longer visit but they'll be back soon.

Todays Rundown

Just got done talking to one of the doctors on Liams case. It was a doctor we've had before, Dr Kennison. He hasn't seen Liam since October yet he remembers akk these little details about Liam that aren't in his chart. He is a good doctor but the last time we saw him he pushed just acid reflux and a week after he was off Liams case, they do rotatotions, and he remembered Liam and his case very well. He came in asked me to tell him whats been going on with Liam then said "but skip the lungs because I know all about them and thats not the big big issue here. I want to hear about the vommiting". So I told him whats been going on since last month and what the game plan with Dr  Googin was. I explained the weight loss and everything. When he tried to just push meds I went into more detail and reinforced Dr Googins plan because I refused to beat around the bush and play games. He said it did sound like thats what needed to happen but he needed to call in the GI on call, Dr Haight (Whom Dr Kennison nicknamed "Pringles Guy". My husband has nicknames Kennison "Mouth" kinda funny how Kennison and Justin are alot alike). He walked out and within 5 minutes Dr Haight walks in. Kennison just happened to see him walking down the hall and grabbed him and asked him to look at Liam. Haight agreed to do arithomiacin for Liam, I agreed but then he said "If that doesn't work we'll probably have to change out the gtube". Thats when I stopped him. I explained in extent what had been going on and Googins plan. When he saw Liam's belly he exclaimed "OMG this kid needs to gain weight" I explained that that was the problem. That as off last week Liam had lost a little over a pound and that was when he was holding down a heck of alot more food than he is now. Thats when he fully understood the situation that we couldn't play around anymore than Liam is more critical that he first assumed. He left saying he completly agreed that he was going to go talk to Kennison and a fellow GI that worked on the GI team. So now I'm waiting the final decision. The good news is we have a plan and that everyone is on board with getting Liam gaining weight for the sake of him lungs then worrying about the slow motility meds after. Meds have only worked short term as of yet so its something we can wait on. Slow motility is serious but the GJtube will sort of fix that for feeding because his feeding will go straight into Liams intestines bypassing that muscle thats causing this problem. It is important that we do get that fixed but we need to look at the whole picture and the most important thing is Liams lungs. I dont know if you all understand why its so important for Liam to gain weight. Liam is so under weight right now. It because he needs so much energry aka callories just to breathe because his lungs are working overtime. If they get him growing bigger, sorta like making him chunky than they know he has that reserve to feed his lungs. This is important because Liams right side diaphragm needs to be repaired but they cant do it untill he's strong. Messing with the diaphragm and pulling it down will ultimately mess with his lungs and then his lungs will work harder and right now he wouldn't make it through that surgery or the recouvery. Thats why our ultimate goal is bigger and stronger. After that everything else will be a breeze. I feel better knowing that yes he's in good hands here but also that the all the doctors are on the same page and following the same plan. ************************************************************************ At 3pm we took Liam to Radiology for an Upper GI to see if his fundo slipped. The test showed that the fundo was in the correct spot. Not suprising. I know the doctors are pretty much off for the day now so we probably wont have anymore test run today. I doubt if Haight or Kennison show up tomarrow saying he's going into surgery asap because thats just not how things work but stranger things have happened. I know there are other doctors that they have to confir with as well as surgeons so I doubt it happens this week at all. It's good to have some sort of a plan or atleast know they are doing something to help Liam.

Waiting Game

Ive spent 3 hours waiting for the doctors to come in. I spent an hour giving meds, taling to the nurse and RT, making phone calls to cancel appointments for tomarrow  and getting dressed, another hour stairing out the windows watching the clouds come and go, then another hour catching everyone up on whats going on with Liam. All in between soothing Liam and putting him back to sleep. Ive seen a case manager, RT, Nurse, nutritionist and the person who changes the trash bags, but no doctors. I was up at 8am even though I was up most the night with Liam. I was going to go finish the registration part for his stay then grab food but was told the doctor would be in soon I needed to talk with them so I couldnt leave. Lack of food is starting to make me cranky like Liam. Liam has been taking cat naps. He's smiled once for me and that was enough to melt my heart. We should seriously take lessons from these babies who are going through so much but can smile through it all. As of now we are still waiting on blood cultures to prove or disprove infection. As far as I know thats all thats going on since I havent talked to a doctor.

Liam's on his 5th Hospital Stay

Liam and I are settled into a room :) He is finnally sleeping comfortably. They changed his tylanol over to motrin even though his fever ended up breaking and they are going to continue with the motrin ever 6 hours I believe it is. Liam is on IV fluid and we are slowly starting feeds at 10mls per hour continuosly. I know its not alot at all but we have to see if he can hold that down since he's not holding hown 20 mls. They're probably going to call GI because his slow motility has turned into barely empting at all. He is negative for RSV and flu but his white blood count shows infection. They said its not enough to administer antibiotics but I have a feeling thats going to change tomarrow when his team of doctors comes in to see him. They officially declared him asthmatic. Funny how he has chronic lung disease but they didn't want to treat him as an asthmatic untill he had several stays like this in the hospital. Besides asthma runs in the family so we knew he was going to have it anyway. Theyre doing albuterol nebulized every 4hours. Sucks because Im alergic to albuteral and now that I have given 2 treatments myself while in ER Im already having issues. Why the RT had me do it is beyond me but whatever thats what mommies are for. They are giving liam a series of 5 doses of steroids for his lungs. Hopefully they will yeild some results since pulmacord (a nebulized steroid) as well as qvar (inhailer steriod) hasnt worked. Xrays looks good for Liam, even though he sounded crakly which usually indicates colapsed lung they didnt see that. They also didn't see reherniation which was a plus. Liam has been desatting all day. He kept going down to 92 and below and staying there for a few minutes at a time. He's leved off at 93/94 and is pretty much staying there most of the time and thats even while sleeping too. Just a bit ago he desatted at 88 and stayed there for a few minutes. Our nurse, the RT and nurses assistant will be comming in at midnight to take vitals, give a breathing treatment and change out Liams gtube dressing as well as put his on oxygen. This will be the first time since october (when he had gtube/fundo surgery) that he's needed oxygen. Im past getting upset at a small set back like this because I just want him better and will do anything to make him better. Hopefully Ill feel that same way once he has the nasal canula back on. They say kids that come in with "asthma" issues usually stay 2-4 days but because of his GI issues his stay might be longer. While the nurse was trying to make sure she had the right size canula she had to walk around the bed 4 times because Liam would roll the oposite side as soon as shed reach one and that was while asleep. We laughed. We have a nurse that weve had before and shes so funny. Im glad that we could start the actuall stay with a nurse we like. Hopefully things will start getting better for Liam's lungs.........Liam is now on the nasal canula. Its set at only 1 litter but he's satting back up at 99%. It looks like he just needed alittle help. I am happy that he's satting better however Liam is not. He absolutly detest the nacal canula with a fierce passion. It took me 20 minutes to calm him down though not quite sure if I calmed him down or if he just passed out on me. Either way he's back to sleep. Hopefully the poor little guy will sleep mostly through the night because he desperately needs rest. Thank you all for your prayers and good thoughs as well as your encouragement, and support.

New Clothes: 3 new outfits

Lanie got several new outfits for her birthday. They were all so cute and adorable I decided to start taking her pictures in them and share the adorableness with you.

Photo Shoot #1 That extremely cute and colorful 2 peace flowered outfit from the Stricklind's



We just love all the bright colors and Lanie looks cute in them, but yes I am biast. I love my baby girl




Photo Shoot #2 That tottaly chick adorable "farm dress" from Elva Parker and family



I love this dress. It reminds me of little house on the prairie when paired with boots. I would like to find it in other colors.



Lanie had so much fun just running up and down the field in this dress. I think it was her favorite photo shoot because she could dress all girly but wasnt told "No dont get in the weeds"



The Stricklinds also bought Liam this adorable jumper that said "one of a kind" and just so happened to match the dress from the Parker's so I had to do a pic of the kids together. If Liam had been feeling better I would have taken him outside but for now this is the best I could get.



Photo Shoot #3 That spunky pink outfit from Laura, Josh, Dakota and Chasity.



Lanie's second favorite color is pink. She loved this outfit. I thought it was too cute that she decided she wanted to wear her boots with it.



Lanie can now hunt for bugs and look cute doing it




Thank you all for your wonderful gifts. We loved every single one of them and Im having so much fun photographing Lanie in each outfit. There are several more new outfits to come so watch out!!!

Pics: Lanie's 4th Birthday

February 9th 2012 Lanie's Birthday Day

Happy Birthday Big Girl!!! Nothing like taking pics right out of bed :)


Lanie got suprised with a bunny


"Its just what I wanted!" She told us


The first thing she wanted to do was hold it


She stayed by the bunny's side all day


She was also told she had to feed it and clean its cage or she couldnt keep it


We bought her a special cake for that day...it was banana nut


She just loves Hello Kitty


Then She blew out the candles....We had a misshap and Lanies hair caught a candle and she now had one less curl on her head :( Thanks to daddy it wasnt her while head


And Daddy thought it would be funny to christen the cake with Lanie's face....you would have thought the world ended. "He ruined my birthday cake. Why would he do that?"


February 10 2012 The day after she turned 4

Lanie still didn't want to leave her bunny's side.


Lanie and Jack stayed at the screen door and watched the bunny hop in his cage all day


February 11th 2012 Day of the party

We decorated the house with handmae decorations (Made by me :) ) Lanie's Banner


And paper lanterns just like in tangled movie


We used Rapunzels tower (Lanies xmas gift) as a decoration with all the gift bags for her friends


The birthday Girl...dressed in her favorite color


Hanging out on her bed watching cartoons before her guest arrived


So happy to see Aunt Rose


Liam was happy too


Lanie was all smiles all day


Liam with his cousin Kayla enjoying the day


Miss Chasity having fun too


Dakota had alot of fun playing pin the tail of the donkey


Michael and Stephen had fun running free in the field outside


Stephen


Josh looks like a model..he didnt even know I was taking pictures of him


Sarah hanging out talking to the older boys and watching the men man the grill


Two of the men manning the grill, Andy and Chuck


I got Chasity to smile for me, it took awhile but she warmed up to me


Liam had a blast


Chase cought eating cake


Sarah talking to Kayla


Then it was time to open gifts


This pic was purely to show the pretty gift bag and matching wrapping paper


Lanie loved the shirt and purple shorts from Aunt Linda so much she quickly rolled them up and hid them so the other kids wouldnt take them lol


Lanie blew thorugh the gifts. It was like a tornado of tissue paper blew through the livingroom


See Sydney there with the bow?


We think she thought the bday girl needed to wear it lol Lanie had it on her back for over an hour


Look at the super cute pink sock monkey Aunt Rose and Uncle Cliff got her. Hopefully she will leave Liams sock monkey alone now


I was inlove with this monkey


Lanie rose through my kitchen for days on the scooter uncle and tia bought her


Pictures of Lanie in her super cute outfits are comming!

We want to thank everyone who came to Lanie's birthday party, everyone who sent birthday wishes or cards and anyone who thought of her even if we dont know it. We thank you for your support, your prayers and your generosity. Its been a tough 7 months for Lanie since Liam's been born and Im glad we were able to give her a happy birthday even though we were able to give her as much as we wanted. She deserved the few days we spent dotting on her and loved every minute. Thank you all.

:( Not so Good news from the GI Doc

I just got back from Liam's GI doctor appointment. I really like the doctor, Dr Gookin (I know I most likely missed spelled his name). The appointment was very informative. He came in already knowing Liam's history, extinsively and with a game plan. We talked about Liam's lungs how he was just in the hospital back in january for aspiration. He wants to do a swollow study on Liam to see if he is aspirating when he swollows or when he vommits. We need to make sure that its not when he swollows otherwise when we feed him via mouth it'll just go into his lungs. They also want another gastic emptying study preformed. We discussed several things. Liams weight gain was one. Liam has actually lost a little over a pound from the last time he was weighed. Liam has no weighted to loose. Dr Gookin as well as every other doctor we've talked to is concerned about Liams lungs and thinks that all he needs is to grow bigger and stronger. He started talking about options to getting the callories into Liam. I told him how the surgeon, Dr Jones that did Liam fundo/G-Tube said that if the fundo didn't work they'd have to do another procedure that opens (or removes) the muscle that connects the stomach to the intestines to deal with his slow emptying. He said that yea that is an option but he wanted to try something that wasnt so envasive, something that could be reversable. He wants to do a GJtube. We have 1 week to see if Liam can hold down feeds at an 18 hour continuos feed of 41 ml's per hour. If he cant then he has to have a GJtube. They will insert in the same insition that was previously made for the gtube the it will thread down past the muscle and into the beginning of his intestines without cutting into them. The GJtube will have the option of feeding him solids still and even into his stomach as well as intestines. The dr thinks this is what he needs but would like to try the 18 hour continuos feed before jumping to that. Im feeling like if I cant get Liam to handle these feed that Ill be even more of a failure that I feel now. This is so stressful. To do this procedure Liam will have to be put under and intubated. The highest risk doing this is intubating him. His lungs might not handle it this time. Im trying really hard to feel like its all my fault and not blame myself for everything. It doesn't matter how unfounded those feeling are, I still feel them.

Finnaly An Update!

2/10/12
It’s been a big few days here in the Bryant household. Thursday Miss Lanie turned 4 years old! We hung out, watched movies, played with toys and ate cake. The best part for her was that daddy was able to spend the whole day with her. It was actually the first time since she’s been born that he’s been able to spend the actual day of her birthday with her. They played her brand new board game “Gallop the board game” and both accused the other of cheating. It was so funny to watch them “argue” over who was cheating. After they laughed about it. She was even surprised with a bunny she later named Droopie. She has yet to been able to remember the name. We had a very special cake for that day. I went out and bought her a Hello Kitty cake that was her favorite colors (pink and purple). The special part was that it was banana nut cake and super yummy. We sung her ‘happy birthday’ then she blew out the candles. We had a little mishap with her hair and the candles. She singed off one of her beautiful curls but daddy was there to save the day and hold her hair back from any worse damage. Good thing is that you can’t even tell it happened. After daddy took advantage of being behind her and shoved her face into the cake. She was not a happy camper, and that stating it mildly. It took about 10 minutes to calm her down and explain that its ok for the birthday girl to have her face shoved in cake. I had to tell her how when Justin and I got married and he put cake on my nose so I shoved a piece up his nose. After that she was ok with it. The rest of the day went pretty uneventful.


2/11/13
We had been hoping and expecting good weather today since the last couple of days had been so nice. We planned for Lanie’s birthday party to be outside so the kids could play and we could BBQ. The weatherman even said “don’t cancel your outdoor plans”. Boy he couldn’t have been more wrong! We woke up to pouring down rain. It was cold and dark outside. It rained most the morning so we knew we had to move the party inside. We were determined to have Lanie’s party no matter what. I had worked too hard on Lanie’s party decoration to cancel it. Besides what would I have done with 2 half sheets of cake? Aunt Rose and Uncle cliff came early so we had a really nice visit before anyone else got here. Aunt Rose got to hold Liam and they played with the kids. Lanie showed off her new bunny Droopie. They even surprised me with a valentines day gift of flowers, a pink monkey, chocolates and a card. How sweet is that? Seriously awesome. People started showing up and Lanie had a blast playing with all her “friends” (family kids her age). These kids all within 3 years of each other carried on conversations with each other that had all the adults watching in aww. Some of the kids had some outdoor fun since it had stopped raining and a few older kids oversaw the men bbqing. The house was wild with noise and kids running through out. It was a blast. Liam seemed to handle the chaos very well. He did have his long nap in the middle of all this in our bedroom where it was quiet and dark. Other than that he was good to go. He loved the attention that was doted in him. The kids played pin the tail on the donkey (I didn’t have time to make hit ugene with the frying pan). Each kid got blindfolded and spun around as many times as how old they were. Except little Michael who was spun 5 times then said “hey im not 5” so we did a reverse spin to “retract” the 5th spin. It caused a lot of laughter.

2/13/11
I haven't had access to the internet in a few days and I've been pretty busy. We had Lanies birthday, then birthday party. Since saturday I've been dealing with Liam. We had the after effects of Liam getting overstimulated during the party. He couldn't hold down his formula so we had to give him pedialyte for 24 hours. Just put him back on formula and we're really hoping it takes. We started out slow just to be safe. We're also dealing with some vehicle issues again so weve finnaly decided enough is enough. We can't keep sinking money into the pit of our Yukon so we went to a used car lot and theyre going to make a deal with us, taking the Yukon off our hands. We're going to be getting a 2002 Toyota Prius. Its great on gas being a hybrid so we taking Liam back and forth to all his appointments. It has been so stressful trying to come up with the money for gas and worrying about the Yukon breaking down and leaving us stranded. It was the main reason we had to change Liams CDH checkups from UCSF to Childrens hospital, which has actually been a God sent. The deal wont happen until thursday or friday so we have time to say goodbye to this P.O.S. that I loved so much but have come to hate so dearly. It'll feel so good to get this stress off my shoulders. Lanie has been such a happy little girl since she turned 4. Its like she changed overnight, just grew older and more mature on me. Liam's still doing ok with his breathing treatments. He is breathing just a bit harder since he started getting sick again but for him thats normal. As soon as he starts holding down his formula he should be fine. We just have to watch carefully. He has been in some discomfort and pain lately so Ive been having to give tylanol. Poor baby is constipated and teething. And the constipation could be another reason he's puking. So it's not just one thing we have to work on, its the whole picture because everything is connected. Im trying hard not to think about the tomarrows and what the future holds. Its just too much for me. I have yet to find a therapist or get any help for myself. I have no idea when or if that will even happen. Its like theres just too much to deal with with Liam that I dont have time for myself. Saturday was the closest thing I had to anything to do with me. I put on a dress and makeup for Lanies party. Other than that I throw my hair up, wear my sweats or jeans when im out and dont bother with anything else. Im trying to see the beauty in the world again. To me everything looks so dull and joyless. My husband bought me a new digital camera, a good one for photography. He knows Ive been wanting one for years and he finnaly gave in and even let me pic it out. I can see the beauty in the photographs I take, just not in the world surrounding me yet. For now, Im taking life day by day and just trying to get through the daily grind while waiting for that day to come when our lives become "normal".

Is It Right?/ Am I supposed to care?

Is It Right?While I was giving my son his 10pm breathing treatment of pulmacort and xophanez that takes 50 minutes, I started wondering about this journey we've been on with CDH. These babies go through so much. We put them so much to keep them here with us. intubation, ECMO, too many to count procedures, seemingly never ending string of surgeries, and the never ending list of meds are just a few things that come to mind. I asked myself "is this right?". Im not saying I would have changed my decision to safe my son because it was my decision. I will never regret that decision. I'm not questioning if it was worth it. My thoughts were purely spiritual. "Is this what God wants?" "Is this how God planned it?" "In Gods eyes was I supposed to let my baby go instead of keep him here with me? Will God think I'm selfish?" I don't know. Was God testing my strength when he gaVe me a Cherub? Did I do the right thing in his eyes?. I don't know. The answers aren't written in a book, atleast I haven't found them yet. If the answers are in the bible I want to know. I want to read it for myself. Some people might say that yes they think I was being selfish, that their religion says God doesn't want it that way. I would respond 'then why would God give him to me?'. When Liam was born it was an experience that I wont ever quiet be able to fully portray. Words will never be able to explain the torment and pain and confussion I went through. The utter heart break. I asked "why" alot. I repeated 'I dont understand' over and over again. The one thing I didn't question or second guess were the decisions I made. When I was asked to sign a paper to transfer my son to UCSF, all I needed to know was where they were taking him and that they would do their best to save him. When they called and explained that Liam was sicker than he should have been for a baby with his condition and they were out of options to help him except ECMO. All I had to hear was that he would die without it. Yes he could have died with it but it was for sure he would die without it. When I gave my consent I made it clear that they could do and should do anything that will save my son. Its all I wanted. I dont regret those decisions. Now I question if God will see those decisions as right or if there was even a right or wrong in the situation. Liam left UCSF sooner than they expected, did so much better faster then they expected. It shocked everyone. He left taking full feeds and what I now consider as a short list of meds. A month later he was back for an NG tube because he was only eating 3/4 of his feeds. We left with a NG tube and pump, then back the hospital (Childrens hospital) 3 days later, ended up with a fundo and g-tube a week later. We left with the g-tube and a longer list of meds. 2 months later were back as Childrens for phnemonia and leave with more meds and a nebulizer. 2 weeks later we go from 1 breathing treatment nebulized to 2. It seems like as time goes on Liam is needing more and more and doing worse as time goes by. That why I ask "is this how God had it planned?". Again I will reiterate that I absolutely do NOT regret my decision, nor my son. I am also not complaining, just stating facts. Do any of you ever wonder what would God think? How does it make you feel about your decisions? Does it change how you feel?

Am I Supposed To Care??On another note. Im getting irritated with people complaining. The kind of complaining that makes you go "and your problem is what exactly?" or "you think this is important? seriously?". Complaining over stupid things, stupid immature things that wont matter tommarrow. It gripes me when they are complained to me. I want to grab them and shake them by the shoulders and scream things like:
Do you really care? Do you really think I care? Do you seriously think this is important? In the past 7 months my son has been in and out of the hospital fighting for his life. He had to have surgery to rearrange his organs for Christ sake. I have a strict med and feeding scheduele to keep up with and appointments for him. Meds that cant be skipped. Feeding that cant be late. My life is no longer my own. If anyone here as the right to complain its me! I wish I only had to deal with stupid mundane things like what he said she said or what happened at work or whatever. If anyone gets to complain its me. Do you hear me complain? Do I gripe about how much of my time it takes to do breathing treatments or how tedious it is so set alarms and draw meds? No I dont. Life is too short. If I spend all my time complaining I wont have anytime left to enjoy it. But dont you dare come to me and complain about such things as the drive through gave you the wrong order especially when you dont bother to care enough about how my son or my family is holding up. How dare you think that the world revolves around your selfish ass when there are people out there having it harder than you. People out there forced to watch their children fight for their lives. People who are starving or abused. Dont you dare come to me thinking I care enough to listen to your rant about the onions they put in your burrito when you asked them not to because my world doesnt have room for selfish jerks like you!!

Yes that is something Id like to yell, or something like it. I just dont understand some people. Complaints about the wrong food or whatever mundane things are reserved for pregnant women and people who have been going through hell and are having an emotional breakdown. So when I start crying because they didn't give me the correct burger or if they stop selling pepsi (better not ever happen!) or I forgot the toilet paper at the store, its not really about that. It may look like it is on the outside but it'll be me finnaly reaching that last straw that "breaks the camels back". People really need to think sometimes before they talk. I really dont care how you stained your new top eating pizza with friends, or how you chipped your nail when you only got them done yesterday. Honestly I dont care. Call me what you will but my brain has enough to deal with.

Prepairing for Lanie's 4th bday party

Lanie is turning 4!!! OMG its so hard to believe! She is excited about being such a big girl and about her birthday party. She turns 4 officially on thursday but the party isnt until saturday. We couldnt find any decorations she actually liked, I have no idea why shes so picky suddenly. I gave up and ended up with plain purple plates, cups, napkins and utensils and a few general decorations. She had to have the purple because its suddenly her favorite color. I was surfing the internet today trying to find cute decorations to add to it and came across some super cute stuff. Lanie loves Tangled so I searched for specific Tangled decorations that I could hopefully make myself. Thanks to Disney I came across paper lanterns.Seriously, why didnt I think of that on my own? Deciding this would be cute for her party and then to decorate her room after I went with it. She loved the idea. Ive been making paper lanterns most the afternoon. (Learn how to make Tangled's Sparkly Paper Lanterns) I didn't go with the kind of paterned paper they went with. I choose purples, blues and greens for Lanies party but I wont post pics until after the party. Then thanks to Google I ran across another site called Calling Supermom. I LOVE this site! It has so much on it! They had a post actually called How To Host A Rapunzel Party. I took a few ideas from them too. They had alot of super cute ideas but some of them just isn't going to work for us. The banner I will be making with Lanie's name. Instead of using their template for printout I will be using either scrapbook paper or felt. Im hoping for felt because it'll be more durable and I can again hang in her room. We will also be using the idea for the mini cake banner flag and cupcake toppers. The idea is cute and will give that special touch to Lanie's cake. We were going to play the traditional pin the tail on the donkey but instead were going to play pin the frying pan on Ugene. Its a really cute spin to the game and Lanie loved it. It also happens to be one of the funniest parts in the entire movie. We laughed so hard when Rapunzel would hit Ugene with the frying pan to knock him out. Other cute ideas I ran across were 'tug a hair'. Taking yellow yarn and creating a thick braid with it to play tug of war. It's cute but not sure yet if we are going to do that. If we had sidewalk I could get sidewalk chalk and let the kids draw since Rapunzel loves to paint. Im still trying to integrate the things Rapunzel liked to do into something that will work for Lanie. I wished we could actually set lanterns to flight in celebration but it's just not safe. Too much of a liability and fire hazard. I was thinking about trying to set a lantern go that is held by a balloon instead of fire. So many ideas so little time. I really wish I had thought of all this sooner so I could have much more time to create all these super awesome things. I know Lanie is super excited and is growing more excited with each passing day. I myself am getting anxious so see how it'll turn out.

Liams breathing update/ Lanies turning 4

We started Liam's breathing treatment that replaces his QVAR inhailer in the nebulizer on sunday. Before I gave him the treatment I looked at his breathing. Already just being off the albuterol for a little over 12 hours he was breathing so much better. We should get to start his xophanex nebulized today. We've been waiting on them to get the order in. There is still some retraction in the middle of his chest but not on the right side. Im hoping that the xophanex will completly clear it up. Liam's pediatrician is starting to think that this is just how Liam will be for awhile until he grows out of it. He doesn't was to admit Liam into the hospital unless it gets worse or we see nasal flairing or him turning pale then blue. Our pediatrician is worried that if we admit him and he's not sick or needing to be admitted that he will surely get sick since its RSV season and there are a ton of people comming down with phnemonia. We're just super happy that he is doing better. I ordered a pulse ox online even though our pediatrician said he didn't think I needed one at this point. I think it'll give my mind some peace. When he's retracting I need to know if he's getting enough oxygen and Liam smiles through everything so I cant go off his moods. It'll be awhile before it comes in the mail though. Right now Liam is still sleeping in the swing or bouncer so he is upright even though he hasn't been getting sick during the night and only gots sick once or twice thorughout the day. Im playing it safe because his aspiration cause phnemonia once and we dont need it again. Even though Liam hasn't been taking anything longer than cat naps throughout the day he's been in good spirits. He's not as cranky and doesn't want to be held all the time. Lanie has been helping us with him alot. She sits infront of him and talks to him and gets him his toys and plays with him. He thinks is the greatest thing in the world to have all that attention. She gives him his paci and turns on his music. She's such a huge helper. If he needs a diaper she will bring it to me or if his pump is beeping she'll turn it off if thats what it needs. I don't know what I would do without her. She growing up so fast. She will be 4 on thursday. I can't believe I have a 4 year old! I feel so old lol. She's growing so fast, and Im so proud of her. She can count 1-12 and recognizes the numbers when she sees them somehwere. The other day when we went to get gas she told me what pump we were at. She can do addition (1+1 through 7+1 ao far. And even 4+4,5+5 and 6+6). She knows so much already and hasn't even started school. We had thought about putting her in pre-school but with Liam's health being so fragile and the frequent hospital stays we cant risk it. We can't risk her getting exposed to viruses and bringing it home to Liam. We also can't risk getting her settled in pre-school and end up having to pull her out because we had to do another stent at the hospital. So pre-school will be conitnued at home by me. I would love to get her into some sort of activity. She does need the interaction with other kids. For now shes stuck with me and Liam throughout the day. We're throwing her alittle party saturday for her birthday out here at the house. Nothing big or extravagant. Nothing like Ive been able to do the past years. Just BBQing hamburgers and hotdogs and having family over. Not even alot of family at that. Everyone asked what she wanted and I told them shes wants everything but she really needs clothes for spring and summer. I know she'd love getting a ton of toys but we just had Christmas were she got a ton. I had t think ahead and be practical. I just hope she has a good time.

Changes on the horizon

Met the pediatrician at Kaweah Delta this morning. He had to go see another patient and took time to see Liam. He is concerned over Liam's tachypnea but his lungs still sound clear with good breathe sounds. I was telling him that I think it was just the albuteral that Im allergic to it. Everytime I give Liam a treatment my symptoms get worse. The very last treatment I couldnt hardly breathe after and had hives. I told Dr Coverston that these red bumps showed up after we started the albuteral and that he didn't seem to breathe better after the treatments. Liams albuterol was switched back to xophenex but now nebulized and his QVAR was changed to pulmacirt, a stronger steriod preventative med. Hopefully these work and then his vommiting will stop. If not, then we'll have to take it from there. We can try new meds but theres only so many out there. The only other solution would be a surgical procedure where they open up the muscle conecting the stomach to the intestines with a shunt since he had slow motility. Surgeons said he might have to have this done if he was going to continue to vomit. I have hopes that the new breathing treatments will work. Theres no reason to think that they wouldn't. However I am thinking of putting Liam back on the ranitidine (antacid) because I dont think the other antacid ever worked for him. And I want to find a replacement for the Reglan since there are so many side effects and dangers to taking Reglan. Usually Id say "nows not the time to mess with meds" when he's sick but maybe now it the time. Obviously if somethings not working then we need to find something that will work instead of being discouraged by that one thing not working. Liam can handle his nightly continuos feed of 35mls per hour. We tried 8hrs of 43mls per hour today and it didnt work. Tomarrow we'll try the 9 hours of 41mls and hopefully that will work. If that doesnt work he will be on a continuos feed of 35mls per hour for 21hours a day leaving only 4 hours of not being fed via gtube. I hate that were having such a hard time finding things that work for Liam but I am feeling very obtimistic that there are still options out there and that we will find something. Yes I hate that we're going through this and yes I still want my "easy" button but I cant change things. I cant say Ill feel this way tomarrow or even the next day. Some days are harder than others like Im being crushed by the weight of the world. Other days nothing could bring me down. Is weird being on this roller coaster of emotional highs and lows. Im hoping for more days where I feel optimistic and simi-happy, these are days I can handle. I know its going to be a long journey, and my bags are packed (metaphorically speaking), I just hope I packed for everything.

CDH Tornado

It's not easy. I know its not supposed to be easy, thats its not going to just suddenly get easier. There is no magic "cure all" or 'easy" button like in the staples commercials. It doesn't matter how hard I wish there was, there will never be. It doesn't stop me from wishing and praying for a magic "cure all" or "easy" button though. Every day is a struggle, every day holds new obstacled. I can't get comfortable with the now because things are ever changing. I don't mind change, I love change. I feel like i'm in the heart of a tornado that reaking havock and reckage everywhere it goes. I'm not the one causing the dissaray, just stuck in the middle. CDH has turned my life upside down and is continuing to cause it's damage. Liam is taking another turn back down the path that will eventually lead us to another hospital stay. I've been dilagent with Liam's breathing treatments, despite the fact that Im allergic to them. I put on a mask, and deal with the hives, headaches, itchiness and ever increasing symptoms. The breathing treatments aren't working, he's retracting again which means he's struggling. He doesn't sleep but for cat naps during the day then fights it at night. I have to meet the doctor in the morning. Dr Coverston has to go see a patient at Kaweah Delta hospital and wants me to meet him in the ER waiting room so he can eyeball Liam himself and see the retraction. Were changing his feeds, his breathing treatments will change and then we will go from there. Thank God for options. This CDH tornado is reaking havock on my marriage. I'm doing it all. I do Liams feeds, meds, breathing treatments, diapers. If it has to do with Liam, Im doing it. On top of it I get to hear my husband b!tching and complaining every step of the way. He doesn't grasp the concept of Liams condition and him being "special needs". He thinks Liam goes to the doctor too often and that theres no reason to be going and doing all this. His whole theary is that he's fine as long as hes not blue and if Liam shows signs of being in perel or turning color then we take him to the hospital. He doesn't believe in preventative measures. I get the blunt end of it. He gets pissed and complains and raises his voice and I have to hear it like theres not enough stress on me. I feel like he's blamming me for Liam not being "normal" or "healthy". It sucks. It's not fair. It's tearing us apart. The one person that I should be able to run to for help or support is undependable and unsupportive. I have only 1 person I talk to about all of this and even they can't completly know how it feels to be me. It makes me wonder if CDH has torn apart other families or put mountains of stress on them or if I'm the only one. I feel like I'm the only one who feel this way or who is going through this. It's sad because I feel like it would take stress away from me to walk away from this marriage. I feel so confined and alienated. Im stuck out in the middle of nowhere with two kids, two cats and a computer to get me through day to day. I feel like I'm playing a game of poker and the dealer is dealing shitty cards every turn. I know life can be what you make it but all Im seeing right now is meds, breathing treatmants, and hospital stays. The world is sitting on my shoulders and the walls are closing in. I want some peace in my life to replace the depair and anger and feeling of utter failure. I want to believe all the mantra's I repeat in my head or to others. I want there to be no doubts. I want happiness to replace the dissapointment and depression. I want to know that when I tell people "things will get better for us" or "things wont always be this hard" that it's true and not something Im trying to make myself believe as much as others. When I say "I'm fine" or "I'm holding up" I want it to be true and not a sometimes lie or a half truth. I would love to be 100% positive that when I hold my crying son close and tell him "everythings fine, theres no reason to cry" that its true. It seems I lie or tell half truths more than the truth. I spend so much time trying to convince others and myself and reasuring them. No matter how I try to sugar coat the truth its not going to change the situation. Liam is who he is, he will always have issues. I am slowly moving into the acceptance phase of this. I don't freak out and run to the doctor everytime Liam pukes or wakes up have a tiny bit of tachypnea, theres no reason too. What I cant accept is having to do it all on my own and get added stress from the one person who is supposed to be supportive and help ease the stress. I was handed lemons, but i'm not going to make the perverbial lemonaide. Im going to make chocolate cake instead. I don't know how tomarrow will be, let alone the next few hours, but damn it Im going to fight. Im going to be happy, find a way to be happy and deal with the cards I have been dealt. What's done is done. It can't be changed or erased. I will continue to do what's best for my kids, weather they like it or not. I hope and pray for this tornado to dispense, for us to land on steady ground. They keep saying over and over that it gets better after the first year, things settle down to be more normal. The more I read of other CDH cases the more I see that thats not the case. Maybe things don't calm down but we learn to make this the normal or see it as normal. Maybe we just get used to the craziness and frequent health issues, doctor/special visits, hospital stays. My theory is that we either learn to adapt to this life or we will continue to struggle and fight against it and end up crashing and burning in the end. To adapt, i'm going to have to learn to accept this then learn to overcome it. Its hard when the one person thats supposed to be there for you is fighting is to the death and in completle denial. I know i'm supposed to put it in God's hands, all my worries, all my doubts. I pray hard, but my faith is still a bit shaken. I still find myself questioning him, though not quite as often, but I still struggle. I'm still going to wish for that "easy" button that'll "cure all". All it takes is for one tread to be pulled for everything to either fall into place or fall completly to shambles.